What It’s Like Living with an Invisible Illness

Life is a series of moments that shape your character and direct your future. Those instances construct a photograph with precision detail that frame one moment in time. The days that kicked off the beginning of my journey with invisible illness was just that, a prospect that represented the change in my life’s direction.

I grew up always having a desire to maintain a healthy lifestyle. I knew that my body was my responsibility to respect and understand the importance for its care. I went on nightly runs with my dog until she died. I swam laps daily with my Grandpa until he died, and I was always active in some type of sport growing up.

“You have Crohn’s Disease…”

Surrounded by four blank white walls, old magazines, and a doctor’s office table these four words I heard seemed to creep its way into my life overnight. I know that it didn’t, that I had been in pain much longer than I led on, but it still felt like my entire life changed in the blink of an eye. I didn’t know how this had happened. I am young. I felt like I was healthy because I took care of myself.

Now, here I am, letting my guard down; letting my pride down because I have had enough of trying to make light of a daily journey that is beyond gloomy.

When you get ill, it’s pretty much just a stranger telling you that your life is about to fall apart. Someone telling you that you’re going to lose everything. That everything you know is about to change. They don’t tell you that you will have to repeatedly hit rock bottom and need to build yourself back up. They don’t tell you that you will have to find yourself again.

Finding your purpose in this evolving world is hard enough, let alone when you add chronic illness to your story.

Anyone with an autoimmune disease knows that it consumes you, whether you consciously allow for it or not. Not a day has passed since my diagnosis that I have not been forced to remember that I am sick. The constant reminders, both big and small, get into my head and change the way I think about myself and about life in general.

Every day I am reminded that I need to put in a little bit more effort than the average person to accomplish even the littlest tasks. Oddly enough, this is what continues to keep me driven. I am learning to be comfortable with the person I have become as a result of this battle with my health, with my existence, and that is incredibly reassuring.

I can’t begin to explain the toll that living with a chronic, physical illness takes on a person mentally, physically, and emotionally. 

I wake up each morning, take a breath, and get up to tackle another day. As I move my bones crack, like an old floorboard in a historic home. A home where no amount of labor and effort can do anything for it’s failing foundation.

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Here is what life with an invisible illness has been like for me. You are about to get front row to the vulnerable me, paralyzed by anxiety and fear. 

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Living with an invisible illness is truly perplexing.

I have learned to try my best to normalize and compartmentalize my pain, so that no one has to see me struggle. In some ways that’s the beauty of my invisible illness. I can hide my differences and look “fine.” However, I have to keep reminding myself that I exist outside of my pain.  Like most people, I want someone to say that I am not and I will never be, just my pain.

Living with an invisible illness shows you the tangent uncertainty of life.

It teaches you what to rely on and what is momentary. It also teaches you about hope. It confronts you with realizing that life is worth living, despite all of its unknown aspects. I wake up each day thankful to be alive. I wake up with the understanding that my life is valuable. I recognize that my enthusiasm for life is so relevant, even when my hands shake and I can’t get my thoughts out into words clearly.

Living with an invisible illness let’s you know that your body is not your own.

When I want to stand, it has to be my legs that allow me to do so, without my knees buckling. When I want to write, I must be patient with my hands as I wait for the shakiness to subside. My body is its own and it is in fragments. It is weak, it is reluctant, and it is erratic.

I have learned the importance of listening to my body. Staying in if I need to stay in. I have pushed myself long and hard before I listened to my body scream “slow down, you can’t do this.”

Living with an invisible illness teaches you the importance of finding balance

There’s this constant struggle with wanting to live life to the fullest and wanting to be extra cautious about every small detail because the littlest of things set off your illness.

This experience has forced me to grow up, to be wise, to be tough, and to be more compassionate. It has made me appreciate all that I can do, while I can still do it. I aim to appreciate each second of every day, even when those days are hard.

I still find myself frustrated when I have to cancel plans with friends. I know that I could push it, but I know how I feel, and I know that if I go out and force myself to go out that I will suffer for it later. It is hard to give up things I want to do just because my organs suck at being organs. It is also beyond disappointing to be stuck in a body that I don’t particularly care for.

Comprehending the fact that I get worn down easily was and is still extremely hard to accept. While I still love going out and having fun, I get tired easier. Sure, there are days when I can go out and feel like I can conquer the world. Days where I feel like it’s time for me to get out and raise a little Hell. There also happen to be days when getting out of bed seems nearly impossible and even taking a deep breath is a struggle.

There will be days when I feel great during the day and by the time I get home from work, I am just purely exhausted. So, if I cancel plans, please don’t take it personally. Believe me, I would much rather go out with you and have fun, but my body has other plans for me.

Living with an invisible illness ignited a collision with your other demons, like depression.

Before my diagnosis I had already been suffering from depression so becoming ill has only increased the mental battle I face. It can be as debilitating as the pain that has caused it ignite again.

It sucks to be sick and in pain, and unfortunately the elimination of pain is just pure fantasy so I try each day to find something to keep my spirits up. I am so thankful that I have such a supportive group of friends, and a fantastic team of people that I work with, who do whatever they can to keep me smiling and to keep me laughing.

Living with an invisible illness forces you to fight to save the person you are.

It’s always been said that pain changes a person – extremely quickly . It makes you angry, depressed, frustrated, exhausted, and scared among so many other emotions you didn’t even know existed.

Living with an invisible illness comes with the gift of feeling endless guilt.

I know that it is not my fault that I am sick and that I would change it in a heartbeat if I could, but it does not mean that I do not feel guilty. It feels unfair to me that people close to me to have to live with the consequences of me being sick.

Not only do I have to be extra cautious in certain aspects of my daily lives, but in turn so do the people close to me. For example, if my fiance catches the flu at work, she will likely need to sleep it off for a few days and let it run its course. However, if I catch the flu from her, there is a good chance that I will end up being hospitalized. It’s simple things like washing hands more frequently and keeping things clean that become so much more critical.

Loving somebody with a chronic illness is hard.

Loving somebody with a chronic illness isn’t a walk in the park. Sometimes it’s a walk through a dark tunnel with no light in sight. I’m not going to continue to paint the pretty picture everybody hopes for when they find out that someone they love is a bit more complex than they originally thought. I’m not going to tell you it’s easy. I’m not going to tell you that nothing is difficult if you love the person. I’m not going to tell you anything like this, because it would all be a lie.

Take it from the person who lives inside this dark tunnel 24 hours a day. It’s hard and I’ve had months now to adjust to it. It’s tiring. It’s tough. It breaks me down at time so it’s unfair of me to say that dealing with someone like me will come easy. Hell, I’m still learning how to deal with myself.

Unless you live with an invisible, chronic illness, you cannot possibly imagine it.

For months, my health has been rapidly deteriorating, and I have realized quickly that most people either don’t understand, or don’t even try to understand. There will be times when I am going through something that I know that no one will even ever be able to fully comprehend, because my chronic illness is something they will (hopefully) never have to experience. I know those close to me feel frustrated when I retreat to myself. Sometimes I just need to push everyone away for a moment and be alone with the parasite my body has become.

Living with an invisible illness causes you to evaluate the people in your life.

This doesn’t become a choice, but a necessity. I know that I can’t take handle any extra negativity. I can’t go on defending my situation time and time again to people who were supposed to be the most understanding. I understand that it’s hard for people close to me to deal with this, however, unlike myself, they don’t have to deal with it. I am also trying to remember that because people can’t see outwardly that I am in pain so I can’t expect them to understand.

Staying positive is an important part of managing life with chronic pain, but bad days still happen. I get to feel however I want and I don’t have to explain why I am having a bad day to anyone. I also don’t have to defend why my health takes priority over anything else. If people around me don’t understand that, I know that it’s time to re-consider who I am keeping in my inner circle. I know that I can’t survive with anyone in my life who is making my journey more difficult. I genuinely cannot handle more negativity amidst dealing with my own demons.

Because of this, I know that I’m beyond lucky to have some incredible people in my life who don’t pretend to understand, but still put up with me, and do their best to help me be comfortable day in and day out.

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Having my body shut down on me so painfully and rapidly is still hard for me to accept.

I am now approaching just nine months of at least being aware of my illness. To say that I am overwhelmed that I am here and that I am alive is an understatement. Sure, my life has changed and my plans have had to be restructured but what I have learned from this experience, and continue to learn, has been the single most important lesson(s) in my life so far.

Even though I’m going to be sick for the rest of my life, which scares me more than anything in the world, I have finally reached a point where I can embrace who I am in this moment in time. I’m always going to struggle with the fact that I’m sick. Some days will be worse than others, but I’ve come too far to let my illness control my life more than it already does.

I have accepted that this body is the one body I have. I have accepted that this is the one life that I live. I’ve had to sit back and watch certain dreams of mine slowly disappear. I see the dark circles develop under my eyes from exhaustion and I watch the color drain from my face as I exist another day. It is beyond frustrating to watch my body waste away, having no say in it and no way to stop it. I am not particularly content with my current situation but I have learned that I need to accept and listen to my body. When I recognize how I feel, I find myself having more less bad days. For me, those days are synonymous for good days.

I’m not sure that this is something I will ever figure out, but I’ll continue to stay strong. I’ll continue to allow myself to laugh a little more, smile a little more, and still see the person I am behind all that is happening to me. 

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